UPDATE: Moore family gaining voice on Capitol Hill

A Georgetown boy fighting a rare genetic disease is getting a voice on Capitol Hill.

Chandler Moore, a ten-year-old boy from Georgetown, was diagnosed with Cystinosis at the age of 10 months. The first symptoms of Cystinosis often include frequent urination and insatiable thirst. Chandler will eventually need a kidney transplant.

Chandler is currently the only documented case of Cystinosis in Delaware, joining about 500 in the U.S. and 2,000 worldwide.

This year, the Moore’s will be taking part in “Rare Disease Week” in Washington, D.C. from February 29 through March 3. We’re told they will be joining forces with the Cystinosis Research Network (“CRN”) and the Rare Disease Legislative Advocates to share their story with members of Congress.

Clint Moore, Chandler’s father, says Sussex County is in need of a pediatric dialysis center. Clint says right now, the only option for children in southern Delaware with dialysis needs is travel to Wilmington.

Every December, the family hosts “Chandler’s Chance” at their home in Georgetown to raise funds and awareness for CRN.